If someone was to ask me about my understanding of bullying, a few weeks ago I would have reflected on the time I bullied our workshop apprentice whilst the older men around us cheered and berated the poor guy. Thank you for refusing to put up with my misguided anger Scooter, you were stronger than me at that time.
I may have also reflected on my children’s experience halfway through high school. They were ostracised from their group of friends due to the boredom of a couple of kids and the belief of their parents that, if my children put up with it, it would resolve itself.
The last place I expected to be bullied though was in an Australian public hospital.
I best include a little information about myself so you can better understand the situation I have found myself in. I am in my early 40s and have been a high-level quadriplegic for the past 20 years. I have a severe pressure wound that has had me restricted to bed for the last eight months or so, 24/7. The chronic pain I have suffered since I got my disability has proven to be one of the biggest hurdles I’ve had to overcome. For the past eight months I have been experiencing bouts of a condition known as autonomic hyper dysreflexia – a potentially life-threatening medical emergency suffered by a small amount of spinal-cord injured people with symptoms that include high blood pressure, pounding headache, flushed face, sweating above the level of injury, goose flesh below the level of injury, nasal stuffiness, nausea, tachycardia and high blood pressure. I also had a soul crushing migraine that would make me wish that I was dead.
One of the unfortunate facts about autonomic hyper dysreflexia is that it is misunderstood and practitioners do not typically have any knowledge of how to deal with it. For example, every time I was admitted into hospital I had five ward doctors standing around me uncertain as to what to do to relieve the situation.
It had been decided by my nursing network and a number of health professionals who had been reviewing my wound progression in my home, that I must attend a hospital emergency department due to the high possibility that I may suffer an uncontrollable attack of this condition and die. I had my support worker pack a bag for me and I called an ambulance during the early evening.
As I was waiting to be processed and assigned to an appropriate ward so that I could receive appropriate treatment from a physician with some expertise in my illness, I was approach by an irate doctor swinging her arms around in an aggressive manner, trying her best to intimidate me and make me go home.
She made it quite clear that I would not be getting any treatment on my wound through the hospital. She continued by asking me what I expected the hospital to do about my situation, to which I replied “I don’t know what you can do for me, I just know something needs to be done because I am not safe at home and I believe the hospital is the only place for me to be where an appropriate plan of action could be made.”
Unfortunately, as I have learnt over a 20 year period dealing with the public hospital system, this sort of response is not uncommon. The chronic health concerns of people with disability are deemed too hard to deal with and this is somehow my fault.
At that point I had to do what is the only course of action available to resist this form of bullying and intimidation: stand my ground. I refused to just go home and asserted my right to receive treatment for a life-threatening injury which eventually resulted in my being admitted to have my condition stabilised and assessed. I still have a way to go and I anticipate further battles to get my needs met.
I understand that hospital emergency departments are stressful places and that the Coronavirus pandemic has only increased the pressure felt by the people who work there. But this does not justify the mistreatment of people with needs that are different to the patients they typically deal with and we must not accept it.
Once upon a time there was a guy who was a left below knee amputee.
In January 2019, he applied for, and was given access to the NDIS as a participant. He was very excited about this because he and others had lobbied hard for this Scheme.
In his first plan, built by an NDIA Planner who knew nothing about amputees, he was given ample Capital Support Funding to provide a complete rebuild of his everyday prosthesis, a brand new, complete fully water proof prosthesis and a very expensive custom wheelchair, complete with a set of off-road wheels and a free wheel device for him to use when he goes camping, which is one of his big goals.
He was given Capacity Building funds to employ an OT to do a full Functional Capacity Assessment. He went through this process and it was identified he needed to get a wheelchair and the new prosthetic limbs, among other things AT.
It was identified that in the next plan Home Modifications Capital Support funding should be asked for and granted as reasonable and necessary. The OT did all that was required of her with regards to documentation, photos and justifications for the next plan.
To say he was happy, is an understatement. He is working in the disability industry, is a passionate advocate and activist and a leader in the Amputee community. He knows the NDIS is very good for his community and continues, despite its flaws and failings, to promote it and extol its virtues.
In January 2020 he had a plan review asking for the Home Modification process to be started and asked for funds to start the process as was identified in the FCA completed in 2019.
The plan was sent to the Delegate for approval at the end of January 2020. The plan was approved and arrived in his My Gov account on the 19 January 2020 and he sent it straight back for S100 review due to the omission of the asked for Home Modification Capital Supports.
In April 2020 he received an outcome of the S100 review stating, amongst other things, “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support represents value for money” and “I have assessed this support against each of the criteria in section 34 of the NDIS Act, and I am not satisfied that your request is reasonable and necessary.” This is his personal favourite,” “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support is effective and beneficial.” To date, he is still fighting with the Agency to get the Home Modifications completed.
The One-Legged Sax Player is a nice guy. He works hard, He is a husband, a father, a colleague, a friend, a confidant, a board member, a speaker, a teacher, an advocate and an activist. He is well regarded in his community and works his butt off for them with little or no reward.
He has paid taxes since he was 15 years old and has served his country in the Royal Australian Navy, so it begs the question, on what planet does a ramp covering 4 steps and making accessing his house in a wheelchair, not reasonable, necessary, effective or beneficial?
My name is Sharon Boyce and I am on the Board of Physical Disability Australia. I am also an author, educator and disability advocate – wearing many different hats and performing many different roles that I never imagined I would be a part of. I am the Advisor to the Queensland Disability Minister and Chair of the Queensland Disability Advisory Council. I am also a part time education academic at University of Southern Queensland (USQ) completing my PhD and a consultant in disability awareness.
I was diagnosed with Juvenile Chronic Arthritis at 11 and have used an electric wheelchair since I was 21. When I was diagnosed I never imagined the impact and change this would bring to my life. I went from a child who never stayed still and who was on every sporting team possible to a very different world. Limited in some ways and expanded in others, but as a person living a very changed life. I had no idea about disability and did not want to acknowledge or be part of anything that was different.
That has certainly changed over time. Through my journey I have explored and discovered many areas. I have become more involved within the disability community, working across many areas to promote a true understanding of disability and diversity. I explored my hobbies of art and music and these became new passions for me, giving me a creative outlet that I had not realised was possible. I have had the chance to exhibit, sell my paintings and also just paint for fun. Music and singing has also been central to my world. I have always felt very lucky that my mum had encouraged this – taking me to music lessons and putting up with my practice since I was four years old. These skills have proved useful in my life especially my work in radio, where I got to interview singers and review movies for over ten years.
I am committed to creating a world where real lived inclusion is possible. I believe that through real hands-on education and experience, and through sharing my story and the stories of others, that barriers can be broken down and real understanding can be achieved. This is real disability awareness.
As time progressed I felt there needed to be more information and understanding about what disability is and how it impacts on individuals in our community. I developed a “Discovering Disability and Diversity” hands-on, experiential awareness programme which enables students, teachers, carers, doctors, health workers and the general public to experience and explore a wide range of disabilities. You can read more about this at www.discoveringdisability.com.au.
PhD Research into dyslexia and educational inclusion and running lectures at USQ have also given me the opportunity to enable others to explore and understand a little more about physical and hidden disabilities, dyslexia and creating inclusive curriculum, pedagogy and workplace support. Through educating others to understand that not all disabilities are immediately obvious, I believe that society will be discouraged from making assumptions and drawing inaccurate conclusions.
I have written a number of books, recently launching “Discovering Dyslexia” with the Queensland Disability and Education ministers. I have also designed an educational resource kit called “Another Day in the life of Sharon Boyce”,written a children’s book called “Discovery at Paradise Island” which is now part of the NSW School Syllabus.
These experiences and opportunities have brought a richness to my life. I am committed to creating a world where real lived inclusion is possible. I believe that through real hands-on education, experience and through telling my story and the stories of others, barriers can be broken down and real understanding can be achieved. Enabling better understanding and empathy that initiates conversation about disability access and inclusion, ultimately working to breakdown barriers.
Born with no disability, I never would have believed this would be my life now and that creating an understanding of disability and sharing my story would be central to who I am. My own acceptance and acknowledgement was key to this.
I believe that together we can create inclusive communities through enabling us all to live our best lives.
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